Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Friday, November 28, 2008

How To Help - Listen...Help for the Caretaker

The most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention... A loving silence often has far more power to heal and to connect than the most well-intentioned words. --Rachel Naomi Remen


Our families have told us people react to their situations of having a baby with congenital diaphragmatic hernia so differently. I often tell them that strangers become the best of friends and some family and friends become just strange. Sometimes people don't know what to say, how to help or say something unintentionally that isn't appropriate.

How can you help a family that is going through this - either just diagnosed in utero, in the NICU, who just became an angel or who is bringing home one of these special children?

(These are just a few - I am sure you all are creative and innovative enough to think of thousands of things to help.)
  • Listen to them - really hear what they are saying and you might find out what they need, Sometimes it is just a hug, perhaps a meal prepared for their family or doing a chore for them that might allow them time.
  • If they have other children, take the children to a playground, mall or something to do away from their family just to do something without the tension that is in their home. This is so valuable.
  • Send them a card, e-card - just state you care and are thinking or praying for them.
  • Help them send out birth announcements, run to the store for them and grocery shop or any other task that takes time or energy - offer to assist them!
  • Don't say you understand - until you have walked in their shoes - no one truly understands. I personally like, "I don't understand but I will try and I am here if you need me."
  • Remember their whole family is going through hell. There is no other word for it - when you are faced with these issues - it is hell on earth. We try to give HOPE and faith that they will survive this and thrive! They do - all say they will never be the same again and they learned more from these babies than a lifetime of learning!
  • Support any and all decisions they make for the care of their unborn, newly born, their new angel or baby at home. They know better than anyone how to take care of their child and their instincts are vitally important - and 99% of the time are absolutely the best for their child and their family.
  • Even one little thing to help - goes a LONG way - don't ever think it does not. Say a prayer or think of them - there is power in positive thinking and prayer.

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